New intro

April 22, 2008

Get a copy of every lab you've had. If you don't know what they mean,

someone here will.

Val

From: hypothyroidism [mailto:hypothyroidism ]

On Behalf Of pmiller864@...

Would anyone like to give me a few things to think about? I will know

exactly on wed.

April 24, 2008

hi Norma

and thank you for joining the group.

please join the iodine group http://www.iodine

look at http://www.optimox.com

http://www.helpmythyroid.com

Gracia

Hello,

Thank you for allowing me to join the group. I am Norma from Ohio. Married

to the same man for 39 years. I am 57 and grandmother to 5. I also happen to

be a proud army mom.

In Feb. I had to have a complete shoulder replacement done. Coming along

very well with that but a week a go Friday I had to have a goiter that was

full

of nodules and my thyroid removed. I have been on synthyroid

for 37 years. I am still waiting for the results of the goiter and the

nodules.

I go back to the doctor on wed. I called the nurse and asked if the

pathologist report was in and she said yes but the doctor was not here. I said

I have

been waiting a long time to hear if there is cancer or not. She said I can

tell you that there are far worse things than cancer to worry about. I said I

was sorry I was sure there was but still did not tell me what was wrong with

me.

My doctor called me back and said something about a dysfunctional thyroid???

and said we have to watch the blood very very closely and something about my

body attacking itself. Before surgery he put me on 50,000 mg of Vitamin D to

be taken once a month and also a lot of potassium during and after the

surgery, He said I have to be very careful about the calcium.

Would anyone like to give me a few things to think about? I will know

exactly on wed.

Thanks to anyone who will offer.

Norma/Ohio

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

April 24, 2008

hi Norma

and thank you for joining the group.

please join the iodine group http://www.iodine

look at http://www.optimox.com

http://www.helpmythyroid.com

Gracia

Hello,

Thank you for allowing me to join the group. I am Norma from Ohio. Married

to the same man for 39 years. I am 57 and grandmother to 5. I also happen to

be a proud army mom.

In Feb. I had to have a complete shoulder replacement done. Coming along

very well with that but a week a go Friday I had to have a goiter that was

full

of nodules and my thyroid removed. I have been on synthyroid

for 37 years. I am still waiting for the results of the goiter and the

nodules.

I go back to the doctor on wed. I called the nurse and asked if the

pathologist report was in and she said yes but the doctor was not here. I said

I have

been waiting a long time to hear if there is cancer or not. She said I can

tell you that there are far worse things than cancer to worry about. I said I

was sorry I was sure there was but still did not tell me what was wrong with

me.

My doctor called me back and said something about a dysfunctional thyroid???

and said we have to watch the blood very very closely and something about my

body attacking itself. Before surgery he put me on 50,000 mg of Vitamin D to

be taken once a month and also a lot of potassium during and after the

surgery, He said I have to be very careful about the calcium.

Would anyone like to give me a few things to think about? I will know

exactly on wed.

Thanks to anyone who will offer.

Norma/Ohio

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

April 24, 2008

Welcome to the list. I'll try to address a point or two for you below...

..

>

> New Intro

>

<hypothyroidism/message/37792;_ylc=X3oDMTJxMnJsZzl\

xBF9TAzk3MzU5NzE1BGdycElkAzE0NTY2NARncnBzcElkAzE3MDkyNTEwODIEbXNnSWQDMzc3OTIEc2V\

jA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTIwODg5OTUyOQ-->

>

> Posted by: " pmiller864@... " pmiller864@...

> <mailto:pmiller864@...?Subject=%20Re%3ANew%20Intro>

> millie5420s <millie5420s>

>

> Tue Apr 22, 2008 2:25 pm (PDT)

>

> Hello,

> Thank you for allowing me to join the group. I am Norma from Ohio.

> Married

> to the same man for 39 years. I am 57 and grandmother to 5. I also

> happen to

> be a proud army mom.

..

Thank you for YOUR service to our country.

..

> In Feb. I had to have a complete shoulder replacement done. Coming along

> very well with that but a week a go Friday I had to have a goiter that

> was full

> of nodules and my thyroid removed. I have been on synthyroid

> for 37 years. I am still waiting for the results of the goiter and the

> nodules.

> I go back to the doctor on wed. I called the nurse and asked if the

> pathologist report was in and she said yes but the doctor was not

> here. I said I have

> been waiting a long time to hear if there is cancer or not. She said I

> can

> tell you that there are far worse things than cancer to worry about. I

> said I

> was sorry I was sure there was but still did not tell me what was

> wrong with

> me.

..

I don't know what could be much worse than cancer that has spread.

Although it's not the automatic death sentence it used to be it is

certainly a life changing report. You would be dealing with medical and

health issues probably very intensely off and on most likely for a long

time. So I hope it's not that. I'd be interested to know what would be

worse in her opinion.

..

> My doctor called me back and said something about a dysfunctional

> thyroid???

> and said we have to watch the blood very very closely and something

> about my

> body attacking itself. Before surgery he put me on 50,000 mg of

> Vitamin D to

..

In Hashimoto's your immune system attacks your thyroid gland, and

usually destroys it. And I don't think it normally takes anything like

37 years. So maybe that's not what he's talking about.

Your blood has to be checked closely for a while until your full

replacement dosage is established. But I think this is much easier to

do with the thyroid totally gone.

If you have Hashimoto's then your thyroid output can vary and change the

quantity of replacement needed. Once it's totally gone I don't think

setting the dosage is that much of a problem. Of course it's possible

he has some other concern in mind.

..

> be taken once a month and also a lot of potassium during and after the

> surgery, He said I have to be very careful about the calcium.

> Would anyone like to give me a few things to think about? I will know

> exactly on wed.

> Thanks to anyone who will offer.

> Norma/Ohio

..

Hopefully you have a better grasp on the situation by now. It really

sounds like he has left a lot of blank spaces in his reports to you; or

you have not understood them. I think you shouldn't take calcium close

to your Synthroid because of interference; and there's also a problem of

calcium being removed from your bones with some types of thyroid

problems or medications. So the shoulder replacement could be connected

with a lot of calcium loss from your bones.

You'll probably need to educate yourself and the internet is a great

place. Just be aware that while you can get great info there you can

find advice that might kill you. Good luck!

August 5, 2008

HI,

I am Carol, age 57. I have an anterior and posterior fusion surgery done in

1997. These were not Harrington rods, but some kind of rods. I have had

trouble ever since that surgery...standing upright without feeling " pushed

forward " has been a problem since the very first days of post op surgery.

Interestingly, through all the physical therapy and all the follow through

appointments with the surgeon, no one ever said " flat back " to me, or

bothered to tell me clearly why I was having this problem. And yet I am

sure they must have all known. Certainly the surgeon knew. And when I

would tell him of my problem, he would shrug his shoulders and that was the

end of it. Now I hear about it through a newsgroup and it is as plain as

the nose on my face.

What is up with this?????

Has anyone here had this same experience of being denied the facts of the

matter..... It is so helpful just to know what the problem is and that it

has a name.

Without that I am left to think that for some mysterious reason (perhaps I'm

not trying hard enough) no one knows what is wrong or why.... And they knew

all along!

I did finally get at Pt astute enough to request x-rays and refer me to

another neurosurgeon who has (in his office notes only, not to my face) used

the word flatback and suggested " revision surgery. "

So I am hoping to hear from some of you that have been there and done that

what it (the surgery) was like..... (I can guess on this one), but more

importantly, what it was like to walk after the surgery.

At this point (19 " fusion T4-L5) I can walk only short distances (house to

car, around the house, house to store is difficult without a cart). I have

been on disability and not working for about 3 years, after just working

part time since the surgery. Long story but I am a single parent with 2

kids adopted through foster care.... One has FASD (!!!) and is now in

residential treatment. Still at home is my ds, at age 9 very bright, and it

is all I can do to keep up with her.

Looking forward to hearing from anyone with relevant advice or experience.

I will also try to check archives (in my spare time !!!) because I am sure

there is info there I could benefit from.

Thanks in advance.

Carol

" No storm can shake my inmost calm, when to that Rock I'm clinging........

"

August 5, 2008

Dear Carol,

Welcome to the group, while we are saddened you find you are having problems and can benefit from being here, still we are glad to have us among us. While most of us here that have been diagnosised with Flatback had our come on due to our Harrington Rods and technique done from the 60's to the early 90's, we have infact heard from people who have had Flatback set in after surgery with rods further down the road. All of us are patients like you, with a common malady, but none of us are doctors or are medically trained, just live with our scoliosis and Flatback syndrome, and try to find a way for us to be more comfortable and mobile. You aren't the first person to utter the fact they found out they had Flatback not from their doc, but from Office notes. Many of us went years knowing something was awfully wrong, only to find no answers, and then being told to live with it, as they had no name for it, and nothing to offer in the way of help. You come at a time where Flatback is more readily diagnosised, and there are excellent surgeons who work with this and are having better results all the time.

Most of us have experienced pain and fatigue in our backs, hips and legs, as we are constantly working against the loss of Lordosis( natural sway of the back) to keep ourselves upright. As the day goes on, and months and years go on, the body just can't keep itself upright, so you look as though you are bent at the waist like a lawn chair. Try as you may, you just can't seem to get upright. Walking and standing become ever more painful, so your world and what you can get accomplished gets smaller. Classic Flatback.

Hope, yes there is, there are many of us that are living proof there is a good quality of life after surgery to correct Flatback. I'm six years post op from my last revision and doing very well. Most all that have revision are glad they did it, some are like me and are for the most part painfree, some struggle with lingering pain, but find it's greatly reduced, and that they are happy to be upright. The surgery is daunting, has a fairly long recovery period, and should only be approached by a doctor with a great deal of experience doing this surgery. I wish I could say there were lots of doc's doing this work, there just isn't, a couple of handfuls across the country, so travel to get to an experienced doc, is necessary for some. You'll have to share with us where you are located and who you have seen. We never recommend a doc for surgery, only that you look at two or three for opinions, from there it's your decision. For me the surgery gave me back a quality life, I can walk and stand as long as I like and I'm able to stand fully upright, so good to see the sky instead of carpet or a sidewalk.

So let us know where you are, hopefully you can get to some doc's for opinions, and see just where you are at. It's a process going through all this, but for me it was worth the work and the surgeries, as I'm thankful each day for my surgeon and that I got through this as well as I did.

The site has tons of great info, the files section has members stories, sit have a cup of tea, and read, you will find yourself in the stories there. Flatback turns you into a medical reader, not only read all the info on the site, but become a researcher and read everything you can get your hands on . It makes you a more informed patient, so you can ask good probing questions of potential doc's, and so you don't feel helpless in what is happening to you. Doc's also take informed patients more seriously, they love to be able to speak to a patient who understands and can pick their brains. Then after you can make the best decision for you, as to who you want doing surgery if you need it, and just what will be done.

Look forward to learning more about you, and again welcome, you are among friends!

Colorado Springs, CO

[ ] New intro

HI,I am Carol, age 57. I have an anterior and posterior fusion surgery done in1997. These were not Harrington rods, but some kind of rods. I have hadtrouble ever since that surgery...standing upright without feeling "pushedforward" has been a problem since the very first days of post op surgery. Interestingly, through all the physical therapy and all the follow throughappointments with the surgeon, no one ever said "flat back" to me, orbothered to tell me clearly why I was having this problem. And yet I amsure they must have all known. Certainly the surgeon knew. And when Iwould tell him of my problem, he would shrug his shoulders and that was theend of it. Now I hear about it through a newsgroup and it is as plain asthe nose on my face. What is up with this?????Has anyone here had this same experience of being denied the facts of thematter..... It is so helpful just to know what the problem is and that ithas a name. Without that I am left to think that for some mysterious reason (perhaps I'mnot trying hard enough) no one knows what is wrong or why.... And they knewall along!I did finally get at Pt astute enough to request x-rays and refer me toanother neurosurgeon who has (in his office notes only, not to my face) usedthe word flatback and suggested "revision surgery."So I am hoping to hear from some of you that have been there and done thatwhat it (the surgery) was like..... (I can guess on this one), but moreimportantly, what it was like to walk after the surgery.At this point (19" fusion T4-L5) I can walk only short distances (house tocar, around the house, house to store is difficult without a cart). I havebeen on disability and not working for about 3 years, after just workingpart time since the surgery. Long story but I am a single parent with 2kids adopted through foster care.... One has FASD (!!!) and is now inresidential treatment. Still at home is my ds, at age 9 very bright, and itis all I can do to keep up with her.Looking forward to hearing from anyone with relevant advice or experience.I will also try to check archives (in my spare time !!!) because I am surethere is info there I could benefit from.Thanks in advance.Carol "No storm can shake my inmost calm, when to that Rock I'm clinging........"

August 5, 2008

Hi Carol,

Welcome to the group! I have had flatback revision surgery in Boston

with Dr Glazer. Where are you from? It is imperative that you get

yourself in the hands of a flatback revision surgeon. It is a

difficult surgery at best. Anyway, feeling frustrated at our previous

resolutions to scoliosis and why the heck they didn't tell me

syndrome! My first surgeon was hugely popular and I heard

basically " suck it up " for about 15 years after my orginal surgery. I

finally gave into cortisone and started the hunt for a revision

specialist, who confirmed the flatback syndrome. I understand and

relate to your experience but look at the bright side, there are

articles and resources here and hopefully someone can give you a few

names of surgeons.

>

> HI,

> I am Carol, age 57. I have an anterior and posterior fusion

surgery done in

> 1997. These were not Harrington rods, but some kind of rods. I

have had

> trouble ever since that surgery...standing upright without

feeling " pushed

> forward " has been a problem since the very first days of post op

surgery.

> Interestingly, through all the physical therapy and all the follow

through

> appointments with the surgeon, no one ever said " flat back " to me,

or

> bothered to tell me clearly why I was having this problem. And yet

I am

> sure they must have all known. Certainly the surgeon knew. And

when I

> would tell him of my problem, he would shrug his shoulders and that

was the

> end of it. Now I hear about it through a newsgroup and it is as

plain as

> the nose on my face.

> What is up with this?????

>

> Has anyone here had this same experience of being denied the facts

of the

> matter..... It is so helpful just to know what the problem is and

that it

> has a name.

> Without that I am left to think that for some mysterious reason

(perhaps I'm

> not trying hard enough) no one knows what is wrong or why.... And

they knew

> all along!

> I did finally get at Pt astute enough to request x-rays and refer

me to

> another neurosurgeon who has (in his office notes only, not to my

face) used

> the word flatback and suggested " revision surgery. "

>

> So I am hoping to hear from some of you that have been there and

done that

> what it (the surgery) was like..... (I can guess on this one), but

more

> importantly, what it was like to walk after the surgery.

> At this point (19 " fusion T4-L5) I can walk only short distances

(house to

> car, around the house, house to store is difficult without a

cart). I have

> been on disability and not working for about 3 years, after just

working

> part time since the surgery. Long story but I am a single parent

with 2

> kids adopted through foster care.... One has FASD (!!!) and is now

in

> residential treatment. Still at home is my ds, at age 9 very

bright, and it

> is all I can do to keep up with her.

>

> Looking forward to hearing from anyone with relevant advice or

experience.

> I will also try to check archives (in my spare time !!!) because I

am sure

> there is info there I could benefit from.

>

> Thanks in advance.

> Carol

>

> " No storm can shake my inmost calm, when to that Rock I'm

clinging........

> "

>

September 25, 2008

Yes Yes Yes, I just posted a message on this. I have had no one

say " flatback " to me. The PT was the only one that have a hint when I

really started having neck problems last year. I found it on the

inernet and it fit me to a " T " . Going back to a scolosis doctor for the

first time in 25 years to get help with the pain that Is getting worse.

I love to dig in the dirt, but I really pay for it later.

Sorry to cut this short, I have got to go on the clock and start work.

I have been searching for someone with the same problem, just hope I can

find you again. Please excuse spelling, etc.. in a Hurry.

>

> HI,

> I am Carol, age 57. I have an anterior and posterior fusion surgery

done in

> 1997. These were not Harrington rods, but some kind of rods. I have

had

> trouble ever since that surgery...standing upright without feeling

" pushed

> forward " has been a problem since the very first days of post op

surgery.

> Interestingly, through all the physical therapy and all the follow

through

> appointments with the surgeon, no one ever said " flat back " to me, or

> bothered to tell me clearly why I was having this problem. And yet I

am

> sure they must have all known. Certainly the surgeon knew. And when I

> would tell him of my problem, he would shrug his shoulders and that

was the

> end of it. Now I hear about it through a newsgroup and it is as plain

as

> the nose on my face.

> What is up with this?????

>

> Has anyone here had this same experience of being denied the facts of

the

> matter..... It is so helpful just to know what the problem is and that

it

> has a name.

> Without that I am left to think that for some mysterious reason

(perhaps I'm

> not trying hard enough) no one knows what is wrong or why.... And they

knew

> all along!

> I did finally get at Pt astute enough to request x-rays and refer me

to

> another neurosurgeon who has (in his office notes only, not to my

face) used

> the word flatback and suggested " revision surgery. "

>

> So I am hoping to hear from some of you that have been there and done

that

> what it (the surgery) was like..... (I can guess on this one), but

more

> importantly, what it was like to walk after the surgery.

> At this point (19 " fusion T4-L5) I can walk only short distances

(house to

> car, around the house, house to store is difficult without a cart). I

have

> been on disability and not working for about 3 years, after just

working

> part time since the surgery. Long story but I am a single parent with

2

> kids adopted through foster care.... One has FASD (!!!) and is now in

> residential treatment. Still at home is my ds, at age 9 very bright,

and it

> is all I can do to keep up with her.

>

> Looking forward to hearing from anyone with relevant advice or

experience.

> I will also try to check archives (in my spare time !!!) because I am

sure

> there is info there I could benefit from.

>

> Thanks in advance.

> Carol

>

> " No storm can shake my inmost calm, when to that Rock I'm

clinging........

> "

>

April 4, 2009

Most nodules are benign; good luck there.

For most of hypothyroid patients it's just a matter of getting a

prescription for T4 titrated to your needs, but you'd never know it from

many of the posts you will find here. Some percentage of patients have

one h*!! of a time getting a satisfying result. Some of those seem to

get much better results with something like Armour, which has T3 as well

as T4, but I know of no credible studies to support their reports.

At the same time I do not want to devalue in any way the reports of

those who have such heart-rending tales of their difficulties in hypo

treatment. Many have tried about everything under the sun without

obtaining relief; and it's really sad to not be able to offer any solid

advice that is guaranteed to have quick results.

There seems to be some anecdotal evidence supporting the idea that at

least some of the difficulty in hypo treatment may be related to long

term damage that has occurred for those who were not treated or who were

under treated for an extended period. I believe the idea is that there

is damage to one's system that may take a long time to heal; but again:

I know of no credible studies to support this.

I'll have to let others address the calcium/teeth problems.

Luck,

..

> Posted by: " joyruoff " joyruoff@...

> <mailto:joyruoff@...?Subject=%20Re%3ANew%20Intro>

> joyruoff <joyruoff>

>

> Sat Apr 4, 2009 4:03 am (PDT)

>

> Hello Everyone,

>

> My name is Joy and I was recently diagnosed with hypothyroidism. I

> have been battling this disease for over a year. Unfortunatly, no one

> would listen to me when I complained about my symptoms. In fact I was

> put on antidepressants! What really started the process was an

> incidental finding of nodules in July. This finding led to an

> ultrasound which later said I had 3 nodules on the left, this was in

> August. My primary care doctor felt it was of no concern because my

> Tsh was normal. Never tested other things. so he said in six months I

> was to have a nuclear scan. February comes and the scan shows a 'cold "

> nodule. finally, I am referred to an Endocronoligist who actually

> listens to me. She orders lost of tests and schedules a biopsy. The

> biopsy occurred on Tuesday and it was at that time she let me know the

> blood work indicates that I am hypothroidism. She didn't want to put

> me on anything yet till she gets the biopsy results. So here I am now

> in limbo again! Although, I feel confident things will change after

> Friday of next week.

>

> I really want to just feel normal again. So many things keep going

> wrong with me and that is depressing. My question is will I ever feel

> normal again? Or is this forever? I pray right now I don't have cancer

> for if that is the case I am sure I will have more to deal with on

> that issue.

>

> I am so tired of having so many cavities and root canals. I am 46 and

> until now I have only had two cavities and now 6 plus a root canal and

> possibly another. I was told this is a problem when my calcium levels

> are low. New symptoms are my feet swelling. So any help would be

> appreciated

April 4, 2009

Thank you for your thoughts. I guess I am still in the confusion state

right now. I just want to start feeling better again. I just wish the thyroid

scan never showed a cold nodule for I really would have liked to have avoided

the biopsy. Right now what is most annoying is the edema that has been

occurring. I never thought swollen feet would be so painful. I am also having

my hands swell and my eyes. Some mornings when I go to work I feel like a

freak. At least I know what the cause is now and that gives me some sanity.

Joy

________________________________

From: <res075oh@...>

hypothyroidism

Sent: Saturday, April 4, 2009 10:46:54 PM

Subject: Re:New Intro